ME/CFS and Long COVID Fatigue – Activity Scale

I was looking about online for some information for some of my patients having fatigue issues after COVID and came across a site that had an interesting scale on it. Thought to share in case anyone else found it useful. I added some links at the bottom to store for myself and in case anyone was interested in more information.

I think I am at 50 because I have been going up to level 60 for a couple of weeks and my symptoms have started to flair up. Maybe somewhere in the middle. You are supposed to ask yourself: what activity level am I able to sustain without increasing symptoms?

Click to access rating_scale.pdf

https://onlinelibrary.wiley.com/doi/full/10.1002/pmrj.12684

http://www.cfsselfhelp.org/pacing-tutorial

https://docs.google.com/document/d/1VfENjAiOBKryT-dIOFyU8CyEAAKVR5xk9WyvlZF-u4M/edit

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My Experience with Pfizer COVID Vaccine Hx Post Lyme

My Experience with Pfizer COVID Vaccine Hx Post Lyme

I felt an almost obligation to post something about my vaccine experience. Many people, especially if they have certain health issues, are worried about getting the vaccine. I was. The community in particular has lost a lot of trust in the CDC, IDSA, and the medical establishment in general. I have been fairly lucky. I have had some caring doctors/ARNPs/PAs that really did listen but once my heart and my thyroid tested normal, there was nothing else they could do. After I was treated by a LLMD/PA, most of the doctors I have seen seem to accept a general chronic fatigue type status and move on to the other normal blood work monitoring, testing, and advice. The only time a doctor was dismissive of Lyme Disease, in front of me, was when I was at a marketing lunch with a pain management doctor and asked if he ever treated patients with Lyme Disease. Of course, no one in Florida has Lyme.

This post is not to talk you into anything. It is to provide a little information and a viewpoint. Some of the Lyme community posts about the flu vaccine make people think suffering and death is the most likely outcome. I still have internal debates about the flu vaccine for multiple reasons, most are not Lyme Disease related. I don’t have the loudest voice. I am not trying to sell you anything. I am just trying to balance a little of what is on social media. Not everyone with a Lyme struggle thinks the same way.

I decided to get the vaccine for several reasons

  • I am not in any acute stage of illness
  • I work with COVID-19 positive patients
  • I do NOT want any of the possible long term consequences of having COVID
  • I do not want to get sick or carry the virus to give to others (still mask after, research is ongoing about being a carrier)
  • I have had 2 flu shots (last 2 years), since being treated 7 years ago for Lyme, with no side effects
  • To get things back to relative normal and to decrease the number of mutations, the more people that can be and are vaccinated, the better
  • I do not have any known medication or vaccine allergies.
  • The vaccine’s efficacy rate is phenomenal

How it went:

The location I was able to get an appointment at was set up for healthcare workers that do not work in hospitals. I selected an appointment time and showed up. They had a massive amount of volunteers and paid staff there to help move people through the process. The only waiting I did was the 15 minute recommended observation time to make sure you do not have an allergic reaction. This was not a drive through site so I had to park and get out. They did have wheelchairs and people on stand by to help anyone who might need assistance.

The day after both the first and the second vaccine, my arm was sore. I did some gentle ROM of my arm to loosen things up and get the juices flowing and that helped a great deal. I did not have any of the other listed side effects. The young nursing student that gave me one of the shots said that she had every side effect on the list. She said that with a smile and was happy to have gotten it. I was a little tired for a couple days after the second vaccine. I had a busy week and the received the vaccine on a Friday. I was not able to distinguish between my normal run out of spoons fatigue and any sort of vaccine reaction. I rested over the weekend and was back to baseline.

Please be careful of what sources you use to make your decisions. Please do not share posts that may have disinformation.

https://www.wsj.com/articles/russian-disinformation-campaign-aims-to-undermine-confidence-in-pfizer-other-covid-19-vaccines-u-s-officials-say-11615129200

If you have any thoughts or questions please leave a comment!!!

Excuse Me While I Take a Nap

  A few years ago I literally fell asleep standing up.  After laughing at myself and saying a prayer of thanks for not falling over or having a co-worker catch me, I thought maybe it’s time to go to a doctor.  I have had 2 thyroid ultrasounds, a CT scan, and with one more blood test, I get one for free.  And the winner is…..nope, nothing, fit as a fiddle.  My sugar is 80, my cholesterol is 145.  My vitamin D is a little low but an over-the-counter supplement is all I need. Continue reading